Am I missing something?

Am hoping that I am not the only one. I had my initial diagnosis 10 yers ago this month. Had lumpectomy, chemo and radiotherapy. 3 years after that, it came back in exactly the same place. Had double masectomy and reconstructive surgery at the same time and Oopherectomy (think thats how you spell it). Since then I had yearly check ups by the plastic surgeon, but nothing else. I have never had any scans, bone or otherwise. No tests to see it it went anywhere else, nothing. Is this normal? Should I be requesting checks?

I feel extremely lucky that I appear to be ok, but have lost 2 frinds in the last 3 months that appeared to be ok!!!

Hi Kaz

I don’t think your case is unusual. I was diagnosed 13 years ago and although technically never discharged from the hospital because of my family history I just used to see the specialist once a year for a ‘how are you - fine thanks’ consultation and nothing more.

In 2004 I started getting back pains and to cut a long story short I was diagnosed with secondaries to the spine and liver but within that 10 years I too never had any scans etc. It seems to me as though most places prefer not to give women unnecessary scans unless there is something niggling them.

Maybe it might be an idea to have a word with the breast care nurse to see what her slant on it is?

Take care.

Pinkdove

Hi, Thanks for that.
My breast care nurse has retired, but I have just spoken to my new GP who is going to do a blood test next week and then take it from there. I do a lot of running and have always got niggly pains here and there, so I don’t want to over react. Will see what happens after the blood test.
Good luck to you. xx

I think it depends on the staging and grading of your tumour and whether it has spread to the lymph nodes. My hospital did not do any routine scans either when first dx in 1999 - apart from a full blood test and if I remember a liver ultrasound. Then just saw the breast surgeon yearly and had mammo on the ‘good’ breast and that was it. It was only when I had a recurrence with wide spread in 2005, that the whole battery of tests was carried on and I stll see the oncologist every 3 months and have had dozens of scans and tests since then. My prognosis is not terribly good and I think they just want to keep a close eye on things. But I have a brilliant GP and if he thinks anything is ‘amiss’ will immediately sort out bloodtests, x-rays etc. and review them with me. However, I think the general protocol is that hospitals do not routinely scan as the ultimate outcome is apparently irrelevant as to how many scans etc. you have.

Rest assured, if you were to present with any problems, I am sure they would carry out any relevant tests. And if you are feeling fine, enjoy!!!

Birgit

Hi - I have just questioned my BCN about this. My Onc department did do routine scans, bloods etc. but found this actually caused unnecessary stress for example waiting for results, also liver especially can be up and down depending on what you have had to drink. In the end based on a number of studies they stopped. Now they do yearly mammograms and a hands on check. They will do additional tests if you present with worrying symptoms. Apparently thius system is as effective as doing the full monty every year for everyone.

It may be worth looking at Musa Meyer - ‘After Breast Cancer’ where she covers some of this. It has been discussed before.

Take care - good luck for the future - Swanie.

Thanks everyone. I am having a blood test this week as I am worried about my bone density, but the doctor wants to do a blood test first and take it from there. I have never had any tests for my liver, which worries me as my other friends both died due to it spreading to the liver. Am hoping to have a good chat with my GP when bloods come back, but she is a new GP for me so may not be able to give me the answers I need.